International studies indicate that 3.5 to 5.9% of people around the world could be affected by some rare diseaseat some point in life. This equates to a number between 263 and 446 million of people on the planet.
The Ministry of Health considers that A rare disease is one that affects less than 1 in every 2,000 live births. The folder works with an estimate that 13 million Brazilians suffer from some rare condition. This represents 6% of the population.
Difficulties in obtaining medication and scheduling appointments and exams are among the biggest complications highlighted by patients (find out more below). “Judicialization” – which is when people turn to the courts to receive treatment in the public network – has become increasingly common.
“It takes me, on average, eight months to schedule an appointment. Then, six to eight months to have exams. The patient’s journey is a giant battle. By the time they manage to see a doctor again, the disease has already progressed”, says Lauda Santos, who presides over the Association Maria Vitoria of Rare Diseases, in Brasília.
Only in the Federal District, around 140 thousand people have a rare diseaseaccording to data from the Department of Health. Ana Paula Morais, 39 years old, is one of them.
Ana Paula was diagnosed with Multiple Sclerosis in 2017. Her condition is “primary progressive”, one of the most aggressive forms of the disease.
To undergo treatment, Ana Paula turned to the Public Defender’s Office. She needs a medicine called, Ocrelizumaba high-cost drug.
At first it worked and she had access to the medicine. However, after two years the DF Health Department stopped providing it, according to the patient. Without the medicine, the disease advances.
According to Ana, the Ocrelizumab costs between R$80,000 and R$120,000 for two ampoules (equivalent to one dose), which are applied every 6 months.
“This was the only medication, since my diagnosis, that managed to stop the disease from progressing. I didn’t improve, the sequelae I had continued, but on the other hand, I didn’t get any worse while using the medication”, he says. A-N-A.
Since 2017, Ana Paula has been president of Association of People with Multiple Sclerosis (Apemigos Brasília)an institution that welcomes and assists around 700 people with sclerosis in DF.
